Puzzle Pieces Coming Together?
“There have been some things that have really helped me … to move my thinking forward….The picture is coming together.” Dr.. Bateman from a talk at OFFER
Are the pieces finally starting to come together for Chronic Fatigue Syndrome?
Take the pieces of a big puzzle – piece a few together, scatter some of the rest on the floor, and then throw the box and the rest of the pieces away – and that’s what we’ve had with Chronic Fatigue Syndrome. We’ve had a few pieces of the puzzle, some of which fit together (and some of which didn’t appear to) but nowhere has the broad outline of the puzzle – the disease – been apparent.
Dr. Lucinda Bateman thinks that’s changing. In a videotaped talk for OFFER she stated she believes the broad outlines of the ME/CFS puzzle are now visible, and as they continue to become more visible we’ll be able to fill in the pieces of the puzzle faster and faster.
Two events helped Dr. Bateman come to this conclusion.
IOM Committee – One was being on the IOM committee. The IOM committee was a great opportunity, she said, to be around really smart people who are really good at what they do – working together to solve a problem that no one has been able to solve. Reading and summarizing two hundred ME/CFS abstracts for that group really got her mind cranking. (The IOM committee appears to be looking at all the literature. Ron Davis, another member, has also been poring over hundreds of papers.)
Stanford Symposium and IACFS/ME Conference – Those mental gears the IOM work began turning shifted into high gear for Dr. Bateman at the Stanford Symposium and the IACFS/ME Conference in March of this year. For the first time widely ranging research findings began to mesh for her; the puzzle outlines were becoming more apparent. She believes she now knows where the root of the disease is.
A Modern Medical Mystery: Exposing the Weaknesses in Modern Medicine
First, though, she asked how disabling illnesses such as ME/CFS and Fibromyalgia which affect 5 to 10 million people a year in the US could still be such a medical mystery?
She turned that question on its head by simply asking, “What kind of illnesses should our very advanced medical system have difficulty dealing with? That is, what kinds of illnesses is it weak in?”
Our medical system isn’t all that interested in viruses unfortunately …
Viruses: Viruses, of course, have played a huge role in our medical history. Formerly they were major killers and causes of disability. Now, unless you have HIV/AIDS or are a transplant patient, viruses are almost like an afterthought in the medical world.
Dr. Bateman noted there are not many drugs for viruses and not a lot of tests for them. The medical system generally starts focusing on viruses only when people are about to die from them.
(Kristin Loomis of the HHV6 Foundation has noted that the medical community in the U.S. is very reluctant to view viruses as causal factors in disease. Even in idiopoathic heart problems where a viral etiology seems likely biopsies are not done in the U.S..)
Immune system: We have a rudimentary understanding of the immune system.
Endocrine system: We’re good at the basics, but we have little understanding of how endocrine problems originate in the hypothalamus and pituitary (as they appear to do in ME/CFS). She noted that when she tried to do more extensive workups she found that (a) endocrinologists don’t do most of the tests in the textbooks, and (b) the tests they do are not adequately covered by the insurance companies.
(Stopping there, of course puts the cause of the problem into a black box. The difference between having an adrenal problem and a hypothalamus problem is immense; one is a glandular issue and the other gets you looking at the brain.)
The Three Biggies in Chronic Fatigue Syndrome
Next she talked about the three big factors in ME/CFS are autoimmunity, the brain (neuroinflammation/neuroendocrine), and the autonomic nervous system
Autoimmunity
Next, Dr. Bateman used Dr. Rose’s IACFS/ME talk on autoimmunity to dig deeper. When Dr. Rose, who is often called the “father of autoimmunity”, laid out a description of autoimmunity, this description, Dr. Bateman felt fit ME/CFS just fine.
Substituting the words ‘ME/CFS’ for ‘autoimmune disorder’ came out like this”
“ME/CFS and FM can strike any part of the body and any organ and symptoms vary widely and diagnosis and treatment are often difficult. Another problem is that ME/CFS and FM are allocated in different medical specialties. … This compartmentalization has hampered communication among physicians and researchers interested in autoimmune disorders.”
ME/CFS has many of the factors associated with autoimmunity
Dr. Bateman argued that of the three types of evidence for an autoimmune disorder laid out by Dr. Rose (direct, indirect, and circumstantial), ME/CFS and FM meet the circumstantial evidence criteria of being an autoimmune disorder.
Then she went down Dr. Rose’s list of typical features: environmental trigger, unusually high rate of genetic predisposition, endocrine involvement, and ‘others’, and checked them off one by one.
Environmental trigger to the disease – Almost all the environmental triggers known to kick off autoimmune disorders (viruses, bacteria, stress, and pollutants) have been associated with disease onset in ME/CFS.
Genetic Predisposition – Rates of genetic predisposition to ME/CFS and FM appear to be very high relative to other diseases (perhaps even higher than in autoimmune disorders). A Utah ME/CFS study found 2.5 times the risk of getting ME/CFS in first degree relatives.
The HLA genes control how we recognize pathogens, and HLA gene abnormalities tend to show up in rheumatologic autoimmune disorders as such lupus, rheumatoid arthritis, MS, and narcolepsy that share a ‘soft boundary’ with ME/CFS; i.e., these are disorders ME/CFS is often misdiagnosed as. HLA gene abnormalities have been found in ME/CFS studies.
Autoimmune disorders tend to flock together in the same person; Dr. Bateman can point to increased rates of autoimmune thyroiditis, celiac disease, and Sjogren’s Syndrome found in her ME/CFS practice.
Dr. Bateman on the Puzzle Pieces Coming Together For ME/CFS
Gender and Hormones – Females predominate in autoimmune illnesses as they do in ME/CFS, and men with ME/CFS tend to have low testosterone. Plus, the most common time of onset is when hormonal fluctuations are at their greatest: during early adulthood and during menopause. Hormones definitely play a role in ME/CFS.
A Systemic “Autoimmune Disorder” – Dr. Bateman highlighted lupus, an autoimmune disease that can attack – and this is the important part – every organ in your body. Lupus can do this because the autoantibodies associated with it attack the nucleus of cells. The nuclei in the cells of an ME/CFS patient are not getting attacked by autoantibodies – something else is going on – but ME/CFS is similar in that it is a systemic disorder that affects many parts of the body.
A systemic disorder originating in the central nervous system
If it’s not the nuclei what is it then? Dr. Bateman noted that autoimmune disorders have been found for virtually every organ in the body except for one: the central nervous system.
A few diseases (multiple sclerosis, Parkinson’s, narcolepsy, dementia) come close, but the medical profession isn’t sure if the destruction found in the brain in those diseases is caused by an autoimmune process or something else.
What is ME/CFS? It’s an autoimmune-like condition of the central nervous system. Next we learn why Dr. Bateman believes the central nervous system is key.
The Brain
“Lots of things happened in my brain [during the conference] to make connections and put those puzzle pieces together.”
A lot of things clicked in Dr. Bateman’s brain about ME/CFS as she watched the presentations on the brain at the Stanford Symposium.
Evidence for problems in the brain has been growing, she noted. Brain blood flows are low, serotonin and dopamine often get dysregulated, inflammation in the thymus and amygdala may be present, and the recent neuroinflammation study from Japan found widespread evidence of inflammation in the brain. Importantly, the more inflammation they found the more fatigued the person was.
“The Sleeping Brain”
The Zinns‘ studies in the Stanford Symposium really put matters into focus for Dr. Bateman. They were good-sized (100 person) studies.
First they found reduced frequencies of peak alpha brain waves across more than 50% of the frontal cortex (the entire frontal and side parts of the upper brain) – a huge part of the brain. That was, Dr. Bateman said, “a little bit troubling”. Since these brain waves regulate our awake/sleep states, reduced alpha frequencies essentially mean people with ME/CFS aren’t as ‘awake’ as healthy people.
Both the Japanese and the Zinn studies suggested inflammation in the limbic system was present
The Zinn’s also found increased delta waves in ME/CFS patients when they were awake. Given the fact that delta waves are usually only seen when we’re asleep, this is a “little troubling” as well and could go far to explain the fatigue present in this disorder.
It was a double brain-wave whammy for people with ME/CFS: the brain waves that signal that one is awake and active were down, and those that that signal one is asleep were up – when they were awake!
Mark Zinn noted these findings could produce pain and fatigue, poor coordination and balance, slowed and more difficult movement, hypersensitivity, and poor working memory.
ME/CFS to him looked like inflammation of the lower parts of the brain, e.g., limbic encephalitis – something that could cause slowing of the entire brain. Dr. Bateman noted an earlier 600+ person Harvard study was able to use EEG readings to accurately predict who had ME/CFS and who did not, and smaller studies using MRI, SPECT, or PET scans have provided ample evidence of brain problems.
(The remarkable thing about the 600 person plus EEG study was that it was able to differentiate between ME/CFS, healthy controls, depressed and ‘people with fatigue’).
She also mentioned that Rhomberg tests were frequently positive in this disorder.
(The positive Rhomberg test results are a fascinating subject. Decades ago Dr. Cheney asserted Rhomberg tests should be part of the diagnostic protocol for ME/CFS, but you’ll never see them as part of a diagnostic workup for ME/CFS suggested by the CDC or the Mayo Clinic. A positive Rhomberg test, however, makes perfect sense given Zinn’s finding. (The puzzle pieces are coming together…))
The Big Picture Emerging
Dr. Bateman then took a step back and looked at the brain from the top down.
First, there’s the frontal cortex, then the limbic area, then the brain stem and the spinal cord. Going deeper into the brain, Dr. Bateman focused on the thalamus, the hypothalamus, and the pituitary. These control the hormones and much of the autonomic nervous system.
The Japanese study provided preliminary evidence for inflammation in limbic regions (cingulate cortex, hippocampus, amygdala, thalamus, midbrain, and pon) of the brain. The Zinns believe limbic encephalitis (inflammation) is present.
What if that inflammation, Dr. Bateman asked, reached the lowest part of the brain where the hormones are produced? You’d probably have problems with the hormones. In fact, you’d probably have the problems with hormones that have shown up in ME/CFS.
She checked off those hormones that at least some evidence suggests are ‘off’ in ME/CFS and/or FM:
- Corticotrophin releasing hormone (CRH) – hypothalamus uses CRH to tell the pituitary to release ACTH
- Growth hormone – particularly in FM
- Thyroid hormone – at least a third of her patients are hypothyroid – an astonishingly high number. Some of it, but probably not a lot, judging from the way she talked, could be due to inappropriate thyroid supplementation. Something else (autoimmunity/neuroinflammation/?) is apparently hitting the thyroid hard in ME/CFS.
- LH and FSH (?) – regulate the ovaries and testicles, and a CDC paper shows almost every gynecological problem you can have is more common in ME/CFS. Also, ME/CFS patients’ symptoms tend to get better during pregnancy, and hormone replacement therapy tends to help in ME/CFS.
- Vasopressin – helps you retain water and constrict your blood vessels; without it you would have low blood volume and problems standing … ”Sound familiar?” she said.
- Oxytocin – oxytocin deficiency makes you prone to depression, anxiety, social isolation, and sleep problems.
Sympathetic Nervous System – Then there’s the autonomic nervous system. Inflammation in the lower brain could mess up the SNS in two ways; by affecting the thalamus (inflamed in the Japanese study) or by affecting the SNS neurons that exit just below the base of the brain.
Inflammation in either area could disrupt the ANS causing the sympathetic overdrive that produces racing heart rates, arrhythmias, and difficulty sleeping and resting. (Heart rate variability studies also show sympathetic overdrive in ME/CFS. Dr. Martinez-Lavin believes the sympathetic overdrive in both disorders begins in the thalamus.)
The Big Picture – an Inflamed Brain
Calling neuroinflammation in the brain the equivalent of autoimmunity in the body, and stating that we know the microglia are activated in ME/CFS, Dr. Bateman proposed that inflammation in the core of the brain ( limbic encephalitis) causes a cascade of problems going both ways – up into the cortex and down into the hypothalamus, thalamus, and pituitary and the autonomic nervous system.
This could cause all the major symptoms in ME/CFS and FM.
Two Subsets
Dr. Bateman believes we have enough data to describe two subsets in ME/CFS:
POTS Group
An infectious onset group that develops autoimmune antibodies to the receptors that control the heart rate and blood pressure; i.e., the POTS patients.
Autoimmune processes appear to stop many POTS patients from being able to stand without symptoms
She sees this a lot in kids. This group doesn’t have a lot of cognitive issues; instead they have problems standing, sleeping, anxiety from excess epinephrine (a.k.a. adrenaline), are deconditioned (because they have trouble standing), and are in pain due to stress and disturbed sleep. The work on this group, she thinks, is going to go fast, and that group tends to get better anyway. They’re clearly easier to treat right now.
She talked about one young man whose mother has ME/CFS and who developed full-blown POTS after coming down with West Nile Virus. By compensating for his POTS (he wears full-length body stockings) he’s able to work and even exercise. He’s no longer deconditioned and his depression and brain fog have disappeared.
It’s not perfect – he has to pace himself – but he’s highly functional, and it’s all from treating the symptoms of his POTS.
His POTS is by no means resolved! It’s likely as bad at it ever was, but ways have been found to compensate for it. He’s being kept functional by the medical profession. With the autoimmunity work going on it’s possible that his POTS will be solved.
Neuroinflammatory Group
The neuroinflammatory group is more complex but the big picture is emerging
These patients – a larger group – have widespread inflammation in the brain causing fatigue, reduced functioning, orthostatic problems (but not nearly as severe as in the first group), problems with sleep, cognition, and neuroendocrine problems. This group is much more complex but the problems are becoming clearer and clearer, and as they do we’ll get more assistance from the research community and better and bigger studies devoted to solving this ‘medical mystery’.
Dr. Bateman ended the presentation with a big smile and said, “Is that cool or what?” She’s clearly excited by what’s showing up in ME/CFS research. She believes the work done at Columbia, Harvard, Dr. Klimas’s group in Florida, and Stanford, etc., is going to create a base that’s going to draw in researchers from other fields.
Questions
Do her discoveries change how she interacts with patients? They don’t change the treatment options available at this point, but they do two things: they validate the treatments that do work because now they can see why they do, and the fact that clear causal pathways are showing up should really provide hope that we’re on the right track.
A follow up question asked if healthy relationships, optimistic outlooks, etc., are helpful? Dr. Bateman said yes, stating that stress, sleep deprivation, etc., all makes this illness worse. Ask yourself, she said, if adding anxiety to your sympathetic overdrive would be a good thing or not. That’s why meditation, accepting your illness, and doing things that slow your heart rate and the sympathetic overdrive present, can give your body a respite and help you feel better. It’s good! And she looks forward to real treatments being developed.
She believes some people do wind up with ME/CFS because they were on overdrive from the get-go (presumably the ‘burnout’ patients) but most don’t fit this pattern. The people with ‘burnout’ (my word, not hers), she said, are easier to treat. She believes that milder, easier to treat fibromyalgia is stress related, and she noted that she herself gets ‘fibromyalgia-ey’ (my word, not hers). If she’s doing too much, not exercising enough, etc., she starts getting stiff and has more aches and pain. Those stress-related symptoms go away when she gets rest, exercises, and maintains her diet.
Dr. Bateman also wonders if early intervention might be very helpful. If you could catch this disease early – within the first six months – how many problems could be prevented? In my case I wonder about that. Things got set for me pretty quickly. While there have been ups and downs – notably with chemical sensitivities which flared enormously at some point – the core of the disease (an inability to exercise, a strange ‘arousal’, etc.) was pretty much set early on. Of course many people develop other co-morbidities that cause further distress and undoubtedly worsen the original condition.
With regard to that other subset – the bigger subset with neuroinflammation – Dr. Bateman said there are treatments that work for other neuroinflammatory and autoimmune disorders such as MS. They’re not perfect, but they can provide years of a relatively normal lifestyle for some. Some people with ME/CFS get well on Ampligen. It’s going to take for this complicated group, but she’s optimistic.
- Next Up: Seeds of Hope From Dr. Bateman and OFFER’s Big Move
- For more on Dr. Bateman
I’ve heard this talk before, however, one has to go back to the beginning and ask the basic epidemiological question at outbreaks such as at Incline Village. Do autoimmune diseases occur in clusters of unrelated people in the hundreds-no. Do they show infectious etiologies such as seen in clusters- no. Some really big holes in this theory!
How about this. The clusters were simply the most visible manifestations of ME/CFS but others who were not in clusters were also getting it.
The clusters simply defined a group of people who were at risk for long-term illness from pathogens who got hit by a particularly virulent pathogen that swept through the community. Others succumbed because they were exposed to EBV late (during adolescence or later) or were simply in a susceptible state.
The clusters are simply one aspect of ME/CFS.
Since autoimmune disorders often triggered by infections I wonder if one looked on would find some clusters?
True It does seem most probable the clusters were but a group of people already “at risk” (predisposed), who were hit by a most virulent bug. But with clusters like Tahoe having such a high percentage of the community affected, this theory would also suggest the predisposition being present in a vast percentage of the entire population……with and without active ME. Interesting to consider what could have caused this predisposition in such a vast percentage of the population.
Anyhow, that’s where my mind goes with the idea….today, 🙂
Great to see Dr Bateman so excited, and hot on the trail.
A couple decades ago a professor of rheumatology who was also my doctor told me that he believed autoimmune diseases were at least in part caused by viruses. He told me whatever was wrong with me would turn out to be an autoimmune disease. It looks like he was probably right.
I would say that your Rhuematologist is one of my new heroes. The more pragmatic questions I ask (given a lack of reasonable responses) about what LATENT-INFECTING viruses can do) the more I wonder about the historical consideration for all of the case studies and findings that have appeared in various journals and what not. There are a number of documented cases where immunoCOMPETENT individuals were gravely effected by HSV (respiratory problems, upper airway problems such as HSV-caused Laryngitis, and so forth), and so forth.
We have a number of published sources that convey on a high-level the innocence of these latent-infecting viruses, but when digging for deeper sources, much of the technical sources don’t necessarily include tests or considerations for the variety of diseases that have been shown from my argument above.
To sum it up: once set of sources tell us specifically what has happened to patients; and one set of sources tell us general numbers and general consequences of these viruses, e.g. acute mono, cold sores, etc.
You see 1…scorpion in your kitchen you may raise your eyebrow. You see a 2nd scorpion 1 min later, you start to wonder; you see a 3rd, then a 4th and a 5th scorpion, then you start to see a pattern; but not yet a definitive conclusion.
How about the possibility that the ‘outbreaks’ are completely unrelated to sporadic ‘CFS’ and may in fact be various examples of viral encephalitis and even unrelated to each other.
Not having to explain ‘the outbreaks’ opens up all sorts of possibilities.
That would make so much sense. I’m really tired of this mythical virus theory instead of focusing on the genetic make up that makes only a small percentage of the population susceptible to all these stressors such as bacteria, stress, pollutants, mold and yes also to viruses.
It was the big elephant in the room, and i’ve been “preaching” essentially what she has been saying to a variety of people (not trying to take any credit in any way). Latent-infecting viruses ARE the big elephant in the room! And it so happens that I have made very similar points as Dr. Batemen. Fundamentally, there is a vast distinction between your common flu virus, and a latent-infecting virus, especially given our lack of knowledge of the immune system.
It’s one thing to have murders and child molestors roaming outside of your neighborhood, but would you feel comfortable w/ 2 girls of your own, and having a child molestor living in your basement despite having a couple security guards on watch of this child molestor?
Like I said, there’s a fundamental difference between harboring latent-infecting viruses vs. viruses that can be cleared from the body. It gets worse when more and more of your cells have been taken over by HSV, HPV, EBV, HIV, or any other latent-infecting viruses.
It is common knowledge amongst the medical community that Virology is treated like Calculus for the average person (at least 20 years ago). Which non-Math person takes Calculus with such seriousness through High School?
Lastly, Dr. Batement is spot on with her assessment of the common doctor and their treatment/opinion/knowledge of latent-infecting viruses. It’s a damn, shame, too. Because all this time, on a high level, we have commonly been advised of how innocent a virus is unless it’s too late.
Cort Johnson knows all too well my point of view on this subject.
Indeed. I hope things are going OK…
It’s clear that the medical profession is mostly interested in viruses that kill you quickly….not in not so latent viruses that hang around and possibly cause misery for decades.
These types of viruses don’t even show up for Ian Lipkin – who desperately wants to help. Here’s what Kristin Loomis said about that study.
“Lipkin used a herpesvirus consensus PCR that has about the same level of sensitivity that you would find at a commercial laboratory, and those labs rarely if ever find viral DNA in the plasma of CFS/ME patients. So this testing confirmed what we already knew: there are no acute herpesvirus infections in ME/CFS, but it didn’t answer the question of whether there any of there are persistent low-grade infections of HHV-6 or any of the other “likely suspects”: c. pneumonia, m. pneumonia, enterovirus, EBV, HHV-6, CMV, HSV-1, HHV-7, parvovirus B19.”
Read more: The Lipkin Study, The Vagus Nerve Infection Hypothesis and HHV-6: Kristin Loomis of the HHV-6 Foundation Talks – Pt. I http://www.cortjohnson.org/blog/2014/01/09/lipkin-study-vagus-nerve-hhv-6-loomis-hhv-6-foundation/
Most of the points by Dr. Bateman have been around for some time. It sounds good but the reality is that not much has really changed. In an article I read the other day on Medscape, they compared “CFS” to Neurasthenia (i.e. a Somotaform Disorder). I am not hopeful that the IOM will instruct the medical and research community to back off from that kind of comparison. That would be some real progress. The pace of change is glacial.
If you look at where we want to be – fully funded, lots of research going on, ready access to doctors – yes, I agree we’re still (except for the stuff on the private side) still basically where we were.
But if you look at the activity that’s gone on – a large number of private research foundations opening up in the last couple of years, the increasing number of prestigious researchers from important institutions focused on ME/CFS, some evidence from the feds that they’re will to spend some money – – I think you can say the a lot has happened, and while the most crucial aspect of this all – the money – is not there yet – the foundation is there for real progress 🙂
You could not say that five years ago.
Yes, I would agree. Much of the activity on the private side has been encouraging. I have hope in people like Dr. Davis (whose motivation would seem to be quite clear: a son having the illness).
I was in the second group for 18 years, and now I have really bad POTS, too. Can you be in both subsets? There seems to be a lot of people like me with POTS as just one symptom of severe ME.
I am definitely in both subsets as well. I started out with the 2nd subset, then a year later developed severe POTS. I think being bedbound for a year helped POTS to get started. OR maybe I was bedbound because of POTS too and didn’t know it.
I’m just wondering, have most of you been tested for lyme via a Western Blot? I came down with CFS after getting the Coxackie (entereovirus) virus, which is thought to be a known trigger, especially by Dr Chia. I went to Mayo and they diagnosed me with CFS and POTS/OI and said there is no way I have lyme because I live in Arkansas. But, I had been talking to numerous people who had been first diagnosed with CFS and then found out later they had lyme. So, I thought I had nothing to lose to try that route. So, I recently went to a lyme literate doctor and according to my symptoms and my Western blot ( Came back positive, even according to CDC guidelines) I have lyme. We don’t have Northeast lyme here in the midwest, but a different form. Maybe bacteria is what is causing all this inflammation? Or, maybe we get sick with a strong virus when our immune system can’t handle it and all the latent bacteria and other viruses become active….Who knows…
I started our with Lyme treatment because I didn’t want CFS because there was no cure. 3 years of Lyme treatment with the best ILADS Dr and I am only sicker. I do subscribe to Dr Horowitz’ 16 point differential. However, I am now taking a closer look at CFS. I wish the ILADS Drs, the CFS Drs and Fibromyalgia Drs would work together in their research. I feel bacteria, viruses and inflammation are all involved. Yet, each group only focuses on one of the problems and doesn’t have a decent grasp of the other 2.
Interesting point on the outbreaks…I might guess that perhaps in certain areas ‘outbreaks’ could be due to a pernicious virus that had a tendency for throwing peoples systems into autoimmunity in the way outlined?
Personally all that has been stated here is in line with what I had been thinking from my own studies (although note I dont regard myself as such a top tier expert!)…Its very encouraging to hear it being tied together and of her enthusiasm.
I love this post, and it somehow just clicks with me. It is good news.
I really ‘feel’ things are coming together for this illness.
Since my doctor really began hitting ‘inflammation’ with supplements in a major way, I have improved. I know there are other things too, that have helped, such as cranial sacral therapy. Direct support to the CNS via the spinal fluid.
Early detection and intervention.
Pacing.
Hyperthermia.
Methyl.
Also the chelation for heavy metals.
Not yet three years sick I am hopeful that I will recover all my functionality one day.
great report
Thanks Jen, could you say what supplements you’ve been taking for inflammation?
Good luck!
I would love to know what supplements you take for inflammation!!!
I think Dr Bateman has done a great job of putting the pieces together, especially the focus on the limbic system and also the electrical activity of the brain. However, I would suggest that the two sub-sets represent an overall high level of cortisol and an overall low level of cortisol. The first causing suppression of thyroid function and also suppression of immune function, allowing latent viruses to re activate whereas the latter causes over activation of the immune system with increasing inflammation. It was interesting to learn that the brain wave activity was found to be abnormal in the daytime as well as the night which would mean a flattened curve, never really asleep and never really awake, similar to the one found with ghrelin in obese patients where they are never really hungry or not hungry, just dissatisfied. Thanks, Cort, for all your good works.
Thanks again Trish. I would not be surprised to find a high cortisol subset mixed in there with the low cortisol group.
I know that when I got sick other people got sick and it was very much like a flu epidemic, so I really like the emphasis on a viral origin. Some of my friends got better, but not me. I also know that one of the next phases of research was looking for viruses in the nervous tissue as opposed to blood serum. I hope that work is proceeding well, but the news I’ve read about Dr. Lipkin and some of the barriers he’s faced are discouraging.
With so many people hobbled by this thing, it really should get more emphasis from public funding.
That’s the next step and it’s a crucial one. This disorder does not get solved without ample federal funding – no disorder does, really.
That is the big missing piece – the private funders – the Hutchins and the others can only do so much. They are however generating research that should lay the foundation for public funding. Simmaron, for instance, is engaged in several pilot studies it hopes to use to get federal funding.
If you know what causes it, you can fix it – or ameliorate its symptoms.
When you do that, reliably, for the people who have been dealing with this for years, I’ll believe you.
Until then, you’re as much hot air as the rest of them: show me the cures.
If it’s viruses, show me the virus. AIDS got much better treatments once HIV was isolated and studied.
Let me know. I’ll be here, by myself, coping as best as I can with rest, and Vitamin B1 (I lucked out on that), and Celebrex (another lucky one). And not eating many carbs.
And I’m waiting, as I have waited for 24 years.
Alicia
I know the rubber meets the road at a cure or better treatments, but I take hope from the fact that a doctor who’s been engaged in this illness in depth for 15 years is quite excited by where we are on the research end – which hopefully will lead to good treatments.
We shall see! 🙂
Thanks for the article-it helps to explain some of the factors I have experienced since being diagnosed with CFS in 2002. I have never fully recovered but have seen some improvement from theracurmin and curcumin + melatonin supplements. The CFS improved temporarily during my 2 pregnancies and following a strict pacing protocol I managed to temporarily “switch off” the CFS symptoms twice A distinct rash appears on my back from the base of my skull travelling down the spinal cord when my symptoms are worse. Interestingly, the CFS has completely suppressed the Ulcerative Colitis I had had since 1992-anyone with thoughts about why this happens in light of the neuroinflammation indicators? How would neuroinflammation affect the gut?
Does anyone have any idea what that rash means?
Maybe the rash could indicate “Chronic Mast Cell Activation Syndrome”? Mast cells in the wrong places releasing histamines, et al.
Sorry meant to say the supplements are curcumin and quercetin-despite my typo in the post they do actually seem to improve mental clarity and reduce brain fog!
It is certainly promising and I have always identified this illness as an autoimmune disease, however, the people I know with other autoimmune diseases are doing much better than I am without the effort nor lifestyle and diet changes I have made. It is frustrating. I want to be hopeful but I have been disappointed through these many years. I became ill with a virus and very high fever, I have never recovered, I am much improved. I also meditate, use stress management, have acupuncture, cranio sacral therapy and have done more than anyone else I know with any autoimmune disease. I still cannot find a doctor who knows anything about CFS/ ME/ DYSAUTONOMIA. I am in northern california and Stanford has a very long waiting list . It would mean so much to me just to see a doctor who has an interest in this disease and knowledge and I am still looking, it’s close to 20 years…… what an absolute FAILURE of the medical and healthcare system in this country. Most people continue to veiw this as psychological in my experience. I did enjoy the Stanford meeting in March and that finally was evidence of a real pursuit for answers, I am not sure it will make a difference in my lifetime. If anyone can recommend doctors in my area I am very interested.Thank you Cort for always providing promising information. I am interested in the natural anti inflammatory herbs mentioned above. Thank you.
There’s the Gordon Medical Associates in Santa Rosa. I met Gordon – a really nice and he seemed like a really smart guy as well.
I do think the debility in ME/CFS often exceeds that seen in autoimmune disorders. My mother had a really severe case of Sjogren’s Syndrome yet she was able to work and travel. Of course, lots of people with autoimmune disorders are taking medications specifically for those disorders.
Still I think you have a point. Neuroinflammatory disorders that affect the central nervous system may be the hardest to treat at all. Have you tried LDN by the way?
Yes, I started at 1.5 mg and now on 4.5 mg. Love LDN, no pain ! Really hope this lasts forever. I recommend it.
What is LDN?
Low dose naltrexone – check out our page on it.
Where is the page on naltrexone information and availability?
Great article but yet again a researcher mentions every trigger except for vaccination. There seems to be a complete mental block for researchers to include vaccinations in their ‘models’ for possible causes of ME, despite many well known ME patients tracing the onset their ME to a vaccination.
Dr Shepherd of the ME Association in the UK has done a lot of research and has provided expert testimony at tribunals relating the the onset of ME following HepB vaccination and recently there have been medics and scientists published in prominent peer reviewed journals highlighting the concern about the development of ME and POTS in young people following the HPV vaccination.
As the article confirms, so little is actually known about the working of the immune system and yet no-one is addressing the effect vaccines have, which challenge the immune system in completely unnatural ways, and often by introducing genetically modifed foreign DNA and aluminium into the body. Infections are discussed often, as are pollutants, exposure to chemicals, stress, overwork etc but no-one ever brings vaccinations into the equation. As the parent of a daughter diagnosed with ME and POTS, which developed suddenly after her HPV vaccination, and as an advocate working with many, many families of similarly affected young teens, I’m aghast and horrified that with so much interest and research currently underway, this doesn’t even get a mention in passing.
I believe that there are very many contributing factors, including pollutants, poisons, plastics, wiffi waves and the like, how our food is grown, what’s in it etc and yes I agree, why are they not looking at vaccines, I am one of those unbelievers in vaccines, and never allowed my children to have them, but used homeopathy. Now I will add another, Dental Anesthesia. I have had ME since1995 (after I had double penumonia). Fluctuating periods of illness, but never ever been entirely better in any way. Last Oct 2013 I was in bed with ME say 50% of time. Between Oct 2013 and Feb 2014 I attended surgery for 3 appointments, two for extractions, one for a filling. I have been in bed almost 24/7 since then feeling iller than I have ever felt before.
On each occasion immediately on being given injection I felt severely ill, I felt the life was draining out of me, I felt weak, dizzy, and incredibly emotional I burst out crying. After work finished I had to be helped to the Day Ward to lie down until I felt well enough to leave. I did not feel well enough but left anyway desperate to get home and into bed. Exactly the same thing happened on the following two appointments. I asked had I been given anything different or a stonger dose and was told no.
Only last week I found out I had been given double the dose, I had only ever been given 1.1ml and was now being given 2.2ml. This was shocking to me as I am well know to have an acute reaction to most drugs. The anesthesia I was given are called Lidocaine, and Articaine. I have found many websites with information which has horrified me, and particularly a website of an organisation in Netherlands called Bosscher Stichting who research anesthesias, and have a lot to say on particularly Articaine, such as people presenting with ME type symptoms afterwards, stomach difficulties etc.
I am tired really of all the, its this its that its the other, tired of thinking about it all, weighing up what I have eaten, how much energy have I used, etc etc monitoring myself constantly, so fed up with it, and right now I am very angry that I am more ill than ever, and that even after it was obvious I was having adverse reactions to the injections, this was ignored and I was given them twice again.
It’s damn obvious that something is going wrong somewhere with millions of us worldwide and it’s time that all the people researching this got together and shared information. This is much bigger than any of us can even imagine, this involves huge multinational corporations worldwide, kching, kching, kching. I am beginning to ramble from my soap box so I will stop here. Peace and Light to all.
It’s funny but I do BETTER after dental anesthesia. I always feel a bit better, had a bit more energy. I’ve never had double the dose, though – and I’ve never had surgery. Did they put you under?
Do you have access to saline IV’s? They’ve helped others recover from surgery..
Hi Caron,
I’m really pleased you have mentioned the role of vaccinations in the development of ME/CFS. I had a HepB vaccination while I was doing my nurse training over 25 yrs ago. Within a few days of having the vaccination, I developed symptoms of chronic fatigue and insomnia. I had to have several HepB boosters over a number of years as for some reason my system didn’t develop sufficient immunity. After each booster, my fatigue got worse and I developed numerous other symptoms. I tried to raise this possibility with the NHS but as you can imagine, my comments were not well received!
I have a daughter with Aspergers Syndrome who is now complaining of tiredness, post exercise fatigue and flu like symptoms. Have you come across any links between autism and ME/CFS as there seem to be many families affected by both conditions? Maybe vaccination has a role to play in both conditions? Controversial in the UK but there certainly seem to be some similarities.
Best wishes
Helen Humphreys
Hiya, I think there is a connection, my brother and dad are both aspie and my mum has mild (hope it stays that way) m.e. she met her birth father recently and thinks he is an aspie too and on dads side there is r.a. …I’d say there is a connection especially when you look at the way aspies have trouble with noise, light and sensory overloading , less energy and trouble processing some types of information… My brother has always understood my symptoms from the get go, without any explaining.
Makes me feel bad for all the times I dragged him out to the beach!
There is a doctor Theo something that links mast cells and autism. Since mast cells could be part of me/cfs then that could be a link there. Maybe people with overactive mast cells shouldn’t have certain vaccinations,or smaller doses.
I also had the same experience with Hep C vaccines as a nurse. I had to take the series twice as I did not convert the first time. I was already ill with ME/CFS at the time and got sicker afterwards, but of course was never believed. There are some scientists who call ME/CFS adult onset autism as there are so many similarities. Autism may be an autoimmune disease as well. Many with this disease have symptoms of autism including myself. I thought I had Aspergers, but the more research I read the more I realize it is a part of the neurological inflammation of ME/CFS. I am also a DES Daughter and believe that is what caused my ME/CFS.
Well said Caron. Also can I add, the large number of ME/CFS patients who have tested positive for one or more forms of Lyme Disease. Why are we not looking into this further? If even simply to irradiate these Lyme patients from the overall ME patient count, or would that start to make things too obvious for us?
I am definitely in the neuroinflammatory group. I am positive for reactivated EBV and HHV6, wheelchair bound within 10 months of illness onset. In haven’t caught a cold in five years. My NK cells are practically non-existent. Treatment with Valcyte has changed my life. I now have some quality of life. Viruses play a huge role in some of us. Thanks for the article Cort! 🙂
Congratulations Nathalie – you should have some hope too with CMX001 under development that a better herpesvirus drug is a possibility over the next couple of years.
I have two cousins with Lupus and two with Multiple Sclerosis. When reading the general “about MS” information on the National MS Society website, I was surprised to discover that you could essentially remove “MS” from the following text and insert “ME” – and the description would almost be a perfect fit. (It’s only when you get into specific symptoms that the descriptions change.)
“MS is known to occur in persons who have a genetically determined predisposition for the disease. However, a great deal of evidence suggests that most people who are genetically susceptible must still be exposed to some other factor or factors in their environment or life experience for MS to develop. Infectious agents are most often proposed as triggering factors, but others have been examined including environmental and industrial toxins, diet, trace metal exposures and certain climatic elements such as sunlight. None has been shown to be causally linked to MS, and exactly what factor(s) may be involved remains an open question. There may in fact be more than one factor capable of triggering MS in susceptible individuals.
While the cause (etiology) of MS is still not known, scientists believe that the interaction of several different factors may be involved. To answer this important question, studies are ongoing in the areas of immunology (the science of the body’s immune system), epidemiology (the study of patterns of disease in the population) and genetics. Scientists are also studying infectious agents that may play a role. Understanding what causes MS will speed the process of finding more effective ways to treat it and — ultimately — cure it, or even prevent it from occurring in the first place.”
Ha! Very nice, Donna.
Did you know that getting infectious mononucleosis/glandular fever increases your risk of getting ME/CFS or MS?
It could be all EBV….and there’s that theory that EBV could be at the heart of autoimmune disorders in general.
I also have a lot of high functioning Autism in my extended family, most of them I would say with undignosed Asperger Syndrome. Most of them are probably on the scale and that includes myself.
Myself and three children were struck down with severe ME in the 80s and I also have a niece with ME. After 17 years the children started to improve then catastrophy they started to sucumb to other conditions.
My son with Aspergers Syndrome developed a degenerative eye condition (Keratoconus) and Coeliac disease. Anouther son developed Ulcerative Colitis and MS at the same time. and my daughter severe Gastroparesis.
My niece developed intractable Intracranial Hypertension and it took 5 years to bring it under control with shunts (draining fluid into chest)
It has been a continuing cause of frustration to me that absolutely nobody is interested in looking at a family like mine from a research point of view yet it must contain answers.
All of us had been exposed to Glandular Fever before ME
Along these lines, you might be interested in reading about a type of autoimmune autonomic neuropathy which has been studied and is being treated with some success. Neurologists who specialize in autonomic problems–unfortunately not our usual doctors or researchers–have already made some inroads into the area some of our research is now pointing to–brain inflammation or autoimmune attacks on the autonomic nervous system.
Go to http://www.dysautonomiainternational.org and click on the Learn More link on the top left. Click on the link for Autoimmune Autonomic Gangllionopathy to read a summary which includes more useful links. Here they have worked out one kind of autoimmune attack on the autonomic nervous system, and some of their research centers are treating it with substantial success, using either Rituxan, IVIG, Corticosteroid Immunosuppressive Therapy or Plasma Exchange.
I am not saying that this is precisely what ME/CFS is in all cases, but we can learn from these kinds of specialists because they work with diseases of the brain and nervous system.
I see a blog in the making – thanks!
To clarify, my post above is in response to Dr. Bateman’s thoughts.
I just checked out a meeting in Washington D.C. in 2013 which Dysautonomia International held, and found it included two doctors known to us, Dr. Alan Pocinki and Dr. Peter Rowe!
The main corporate sponsor of this event was Chelsea Therapeutics which is trying to bring a more effective drug on the market for Orthostatic Hypotension which is Droxidopa, brand name Northera.
Great article Cort! Dr. Bateman has really been cranking up her brain gears, most importantly she seems to have been taking a step back just so that she can look at the forest, instead of keep on looking at the single trees ;).
What I find even more interesting is reading some of the comments. The one about smoldering viral infections (Kristin Loomis has been very vocal about it and you have done a great job interviewing her), the one about autoimmunity and viral infections (on which Dr. Rose has been writing and talking about for decades).
I’m reading between the lines and seeing a thread, that thread is our disease speaking to our doctors, only a handful of which have been really listening to us (Prof. Montoya is one of the few).
Once again I’d like to say that if there is one researcher able to help us undo the many knots and bring clarity to the messed up (due to bad a good amount of bad science and biased view) ME field, is certainly Prof. Davis from Stanford. I’m absolutely convinced of his capability, on both human and scientific level, to bring us out of the quagmire.
More so than other big time researchers.
You can’t do any better than Dr. Davis. Nobody has better credentials, nobody is more objective – he’s ruthlessly objective about science! – and nobody would be more committed given his situation with his son.
What you translated as SSH (?) above is probably FSH, or follicle stimulating hormone.
Thanks Tim – that sounds right 🙂
Unfortunately everyone is afraid to bring up the obvious. That this is germ warfare developed by the military. That got out to the public accidentally or on purpose. Totally dibilitating and undetectable. That woudn’t stop the enemy now would it. Better to have a million americans sick and suffering to protect the majority of hundreds of milions. My husband and I started trialing all the different things that are in trials now, twelve years ago valcyte broad spectrum antibiotics etc. none of them did a thing. Not until three years ago when we got antiretroviles. Then our brain fog, which was the worst, just went away. We haven’t spoken or written about it too anyone until now for fear the military would round us up and we would just disappear. If you don’t hear from me again, now you’ll at least know why.
So glad so much research is now being done to find a cause/treatment/dare-I-say-cure. It gives us some hope that we aren’t fogotten and that some very smart people are doing their best to help. Praying for a cure.
Good article Cort – the picture Lucinda paints – or the pieces of the puzzle she places – seems to resonate and ring most of the bells. I disagree with the assertion about low testosterone itself being an indicator of increased risk of developing ME/CFS. Mine has always been high normal or just over normal and that didn’t prevent me from becoming ill.
I think that testosterone finding came up with in a study or is coming up in a study…I imagine it doesn’t fit everybody. I think mine was borderline low- normal and testosterone didn’t do anything for me.
It’s the balance between testosterone and estrogen that should be looked into. If you take hormones and don’t keep all hormones in balance, you could possibly get out of balance somewhere else. Not to mention with long term use, some feel, it can stop the bodies normal production and become dependent on the added hormone support.
It’s common knowledge that a large percentage of Holmes-diagnosed “CFS” patients have chronic EBV and HHV-6 infections. And it’s common knowledge that both of those viruses are correlated with development of autoimmune disease. That’s nothing new. It would be in the best interests of patients who have these chronic infections and are saddled with the garbage- can “CFS” diagnosis to be separated out and given a new diagnosis, since those are quantifiable disease triggers and there are off-label treatments available for the infections. Why should those patients suffer while “CFS” researchers like Bateman try to come up with a universal explanation for the illnesses of every single person diagnosed with “CFS” over the past 30+ years under numerous disparate definitions?
She is distinguishing between two groups here. The POTS-only group qualify for various sets of CFS criteria, but clearly these patients do not have ME.
I know what she’s doing, and I think that it is an inappropriate, backwards approach when dealing with patients who have acute viral onset and documented chronic active viral infections. I care about appropriate treatment for a devastating illness,not about fitting into some kind of CFS (or ME or whatever) paradigm.
Have you checked out Dr. Bateman’s reply to the Viral treatment question we submitted to 9 ME/CFS experts? She heartily recommend antivirals for that person.
Very interesting. I did have a very severe acute onset of the illness. And from the very first day of being ill, I definitely had heart problems and difficulty syanding. But I also had the majority of the symptoms in the second group. I have also found that several other individuals who were in a church camp with me became sick – both in the same year I did, and some many years later – after returning from that camp. So the infectious disease aspect if it has always seemed compelling to me.
The good news is that I used to feel so far ahead of the curve in my understanding of the illness compared to the awareness of most doctors. I am now starting to feel behind the curve, and that’s a good thing!
Here’s a question the should have the prospect of flip the medical community on its own head: For those who believe that viruses (such as HSV 1/2, EBV, or CMV) are nothing more than temporary, acute condition w/ little to no consequences, what would each practitioner be willing to accept, financially, in order to backup their own beliefs on these viruses? What would be willing to be paid to to demonstrate to their patients that inoculation with a drop of HSV 1 or 2 will produce nothing more than a innocent skin condition that has little to no physical nor psychological consequences?
To qualify my own position on such a contest, I personally wold not accept all the $$ in the world to be inoculated with any other virus. Seriously. I will, however gladly accept the following:
1) $100 to get the common cold or flu from someone who is currently down with the flu
2) $10 per sting for a bee sting (given a “safe” bee)
3) $5 to eat a fruit or vegetable that is beginning to rot while still in stock @ a Whole Foods restaurant.
In all seriousness, I would gladly take up the above offers given more specific parameters of the contest. But overall, the contest would be close to the above. See, my viewpoint of these specific 3 scenarios is that they are not that bad, and i’m willing to put my health on the line to demonstrate to anyone here or in this world of my conviction.
To those who believe HSV isn’t “that bad”: are you ready to exchange offers? E.g. what $$ are you willing to accept to demonstrate your viewpoint?
The article makes it sound as though Dr. Bateman believes cfs is limbic encephalitis? Could you clarify this for me? It seems like a very bold statement to say the mystery of cfs has been solved and identify it as a disease of the limbic system. I don’t think the current research identifies it as such.
Limbic encephalitis is clinically indistinguishable from herpes encephalitis. The Japanese study that’s referenced here found microglial cell activation in CFS patients, which is also found in herpes encephalitis. I heard from one of Batman’s patients that she does not test for viral infection (and I would love to hear that this is not true because it’s something that a prominent clinician should have been doing for the past 30 years) so maybe that’s why this is all news to her.
Mark Zinn referred to ME/CFS as ‘limbic encephalitis’; I think she believes inflammation of the limbic region is probably key to ME/CFS though. I wouldn’t say ME/CFS solved but that the broad outlines of the disease are apparent. This is all conjecture – based on research – but conjecture nonetheless. We shall see!
This is a ground breakng article so thrilling to read! Dr Batemans Big Picture is so well thought out and the resulting view of this illness fits so well with the symptoms such as the sleeping brain. Well done Dr Bateman! I hope this is just the start of many more researchers looking at the bigger picture.
I don’t want to detract from the body of this work which is magnificent and was inspiring to read but reaching the two subsets part of the article was a bit of a heart sink moment.
I would appeal to researchers not to dismiss the suffering of the children so easily. Some of the most severely ill people I know of are ‘from childhood sufferers’ and that includes three of my own children whos illness is no different from mine. At least two of the deaths in recent years that I know of in the UK have been childhood sufferers.
Dr David Bell, who must have the longest experience following up patients of just about anyone in the world, retracted his conclusions in his earlier study into the recovery of children when he did a 25 year follow up study and in part of this talk (link provide)he details his findings on this subject.
http://www.masscfids.org/resource-library/3-research/311–25-year-follow-up-in-chronic-fatigue-syndrome-rising-incapacity
I think she would include children within those subsets; she did refer to one child who she felt fit the autoimmune subset. I think they’re in there!
Note that, despite more funding and recognition, scientific insight into MS is not really ahead of that into ME. This is because our understanding of how viruses interact with the immune system is still poor.
Most progress currently comes from EBV studies, which are relevant to a whole range of diseases. These all have damage from latent EBV in common but spring from different triggers (in the case of ME, an enteriovirus).
This is one of the most important articles about CFS that I’ve had the pleasure of reading.
The power of positive messages from the research community to make people who are ill and suffering can’t be underestimated – it instantly gives me hope.
I suppose that what I am about to write is a question because people have been writing about the potential link between viral infection and symptoms and whether vaccination could also explain them.
I used to work in health care before I became ill. When I first became ill, I was reflecting on my own journey, looking for a reason why I had not followed a trajectory of healing and improvement and had headed towards the MECFS diagnosis instead.
I didn’t realise at the time that this was such a common thing for people to do and that the answer would not be available.
A paper I read (and because of illness at the time I didn’t not save so I cannot cite it here) suggested that people often become ill after an upper respiratory tract infection and there was another set of people who reported infection after dental surgery before onset.
This made me sit up and take notice. Not because the infections themselves. I wasn’t thinking “Its the URTI that caused it” – but because of the commonality of treatment between the two – both are treated with antibiotics.
I was particularly drawn to this because I had both in my history in the 8 months prior to diagnosis. I’d also had multiple antibiotic therapy to treat both infections.
Since childhood I’d had a problem with sensitivity to medication, including antibiotics and was allergic to penicillin, for instance.
My CFS symptoms appeared after the URTI and declined enormously to the point of incapacity after the infection because of wisdom tooth removal. Sadly they have remained over the 3 years since.
I realise its tempting to attribute my own symptoms and history to one potential cause, but has the dialogue about antibiotic causality disappeared completely.
It would help to explain why there has been an enormous increase in reporting of and diagnosis of CFS that is concurrent to the increasing use of and development of the many different types of antibiotics over the last 50 years.
Or is the current thinking that it is still the infection that is the agent and not the antibiotic that might be used in treatment – or that sensitivity might have been masking the genetic predisposition to CFS.
In these scenarios the antibiotic is the red herring in the mix.
Thank you if you are able to reply and to everyone else who is reading.
Hi Lindy,
I’m not sure my response will be helpful, but here goes . . . Both my husband and I became ill with a severe cold while babysitting our sick nephews 25 years ago. He recovered quickly and completely, I didn’t. Neither of us took antibiotics at that time. A year and a half later, I was diagnosed with severe ME (also FM and MCS).
As a child, I too reacted adversely to penicillin. As a teenager and young woman, I took tetracycline for years (for acne). Approximately 10 years ago, I took a course of one of the potent newer antibiotics (4 or 5 days, I seem to recall) for a severe URTI. This medication neither improved, nor worsened, my ME symptoms. You mentioned genetic predisposition. Both my paternal grandmother, and my father, had many symptoms that lead me to believe they were both affected by ME — my grandmother so severely, she spent most of the last 50+ years of her life “on the couch”. Of course, ME/CFS wasn’t being diagnosed at that time.
From following this illness for many years, there are many routes patients travel before obtaining their diagnosis. It seems to me that any substance/medication that affects the immune system may be a contributing factor, at least for some patients.
Karen
Glad the doctors are realizing more of the picture about ME However, it is about time, if they asked most of the people who are actually sick with this disease I am sure they would have been told about the CNS inflammation and brain encephalitis a long time ago. I know that was the worst part of the symptoms I had along with POTS, Autonomic dysfunction, HPA, imbalance and hormone issues like hypothyroidism and fatigue. Since taking LDN, and Dr Enlander’s Heppapressin complex injections I no longer have the encephalitis like symptoms.
I have read, that one of the issues with viruses in nervous tissue is that in order for the immune system to kill the virus it also destroys the nerve tissue itself. While nerve tissue can eventually regrow, it does so slowly and evidently the viruses or retroviruses or latent viruses or whatever is causing the autoimmune reaction multiply faster than nerve cells can regenerate. It is the location of the organism in the CNS and brain that make it so hard to treat without destroying vital cells of the nervous system.
Is there a way to destroy viruses within nerve tissue without destroying the nerve tissue? If the immune system can’t do that how will a drug do it?
Where there is life, there is hope!
At the risk of sounding ungrateful for this wonderful group of researchers and their work, I cannot help crying out “When will this filter down to clinicians! When, after 25 + years of suffering with this disease, can I expect to walk into a doctor’s office and count on getting informed, respectful, compassionate care instead of eye rolling, condescension, scepticism & worst of all, useless or no treatment!” I have been following all the advances, research (as far as a lay person can), etc. for YEARS, but the doctor’s office experience is still such a crap shoot that it hardly seems worth the time or effort. I no longer expect a cure, but I’d like to be able to reasonably expect decent symptomatic treatment, yet that’s a pipe dream. And I’m not alone, as most of you well know. Any online forum or support group is filled with requests for a “good doctor”, and the same names have been popping up for years. They are very very few and most don’t take insurance, or not the one you’ve got. So many people suffer from CFS/ME….Two or three doctors per state aren’t enough. Don’t medical schools address this at all!? When will this information be taken onboard by internists and primary care doctors? Now that so many are locked into an insurance scenario where those are the gatekeepers, referrals to specialists are hard to come by, so your PC MD is your best hope. Is ANY research money being dedicated to training PC MDs and internists while we wait for a cure?
Yes, a huge need! If you haven’t read the next post on Dr. Bateman’s and OFFERS work to establish a Center of Excellence that might help. She acknowledges the need for up to date physicians again and again in that. A COE in Salt Lake City would be great for that part of the country. I imagine and hope that the CDC multisite study – which is gathering data on treatments (not sure about efficacy) will help to…
It’s going to take a lot of work. I imagine that it will all go together; as funding increases all these other problems will get better as well.
Thanks for this excellent article, Cort! I have always been very happy to have Cindy Bateman “on our team”, she is one of those making a difference for us.
But about the two subgroups Bateman talks about: I was surprised to see that she doesn’t really mention the immune manifestations which are huge in one subgroup of ME/CFS patients.
I am one of those who in the CCC have all the symptoms listed under “Immune Manifestations”: massive flu-like symptoms, swollen lymph nodes, recurrent sore throat, development of new allergies or changes in status of old ones, hypersensitivity to medications and chemicals. On top of this a major proneness to infections. My ME started with a severe case of upper airway infection.
I don’t feel I belong to any of the two subgroups described by Bateman – where do I fit in…?
This ‘paper’ (and work behind it) is BRILLIANT. congrats.